Tuesday, February 12, 2013

February 14, 2013 is the 6 month anniversary of James' diagnosis. I've been debating what to write about: How 6 months of therapy has effected
James, how our lives have changed in these 6 months and what it was like before
then, what pushed me over the edge to 'run away' to my mom's house in Texas,
and other things that are too long to list. I decided that of all those topics
I'd share some of the things that stood out to me the most.

Jan 12, 2013- 5 months in,
and the same day he said "ouch" for the first time.

Aug 11, 2012- 3 days before
our journey began

What started us down the autism road was an article on Babycenter.com in July 2012 about a husband that no longer enjoys
parenting. Somewhere in the comments there was a mom who admitted to feeling
that way. I didn't enjoy parenting and hadn't for a while. Chris was working full-time and going to school full-time. He was doing that for us and he loves his babies and loves being a dad, but I would
wake up and count the minutes until nap time, and then the minutes until Chris
got home, and then the minutes until bedtime.

The biggest supports that I had around me were Robin, my
mother-in-law, and Tami, my sister-in-law. Robin's boys (17, 16, and 12) were
about to start marching band and had Boy Scout activities and she needed to be a mom to them (which she is very good at). Tami
got a full-time job, which I totally understand but that left me alone during the day. And in a month when the new
school year started it was going to get worse. Chris would be in his second to
last semester and was taking three 400-level classes so we would see him even
less than we already did. Some days he wouldn't even get to see the twins at all. So I was going to be alone, all day, almost everyday.

Robin and Tami giving James some of his favorite type of kisses

Around that time we had been planning a trip in August to go Texas to visit my parents. I
told Chris about the article. I told him about how I couldn't handle being alone all the time and that when we went I wanted to stay there and not come back to Utah until around Thanksgiving. I think I broke his heart.

This was a shopping trip where James was acting so out of control
that Chris took him to wait in the car until me and Lily were done shopping
(James is watching Barney)

There were a lot of days and incidents that made me feel
that way. We had a nice little trip to Costco once. James was screaming and
freaking out from the second he saw the cart. We had to move Lily to her own cart because he kept hurting her
(not on purpose). I ran away with Lily in her cart to get all the items we needed. Chris stayed
with James trying to entertain him, you could hear James across the store. We
caved and gave him the iPod, but James still didn't stop screaming so Chris
tethered his phone to the iPod and bought James an app from Baby First TV.

James was so stuck in his daily routine even the smallest
thing would throw the rest of the day off, and sometimes into the next day. In
the morning we would wake up and snuggle on the couch and watch Curious George
2 and then went onto the next part of our routine. One day an occupational
therapist from our state's early intervention program showed up before Curious
George was over and I had to turn it off. It was a knock down, drag out tantrum. The OT ended up leaving
after about 15 minutes when it was obvious that nothing was going to get done.

Watching George one weekend morning with daddy

And the morning after we had rearranged the furniture?
Forget about it.

I do have friends and they invited me out but you can't take
a kid like James into public, I couldn't even take James to a park because he
has no sense of danger, like run into the middle of the street or touch a hot
stove or decide that rolling down the stairs would be fun things to do. It was to the point
where Lily was missing out on life because I was too afraid of what would
happen, especially since he didn't even answer to his own name.

I don't know if he even realized he was on a horse

Then about two months into therapy something happened that truly rocked me. Our therapist brought her new puppy over to meet us and James didn't even react. A cute Weimaranerer/Chocolate Lab mix, a sweet puppy who didn't jump all over him or overwhelm him. Nothing. We are big animal people in my family. I can't ever
remember a time when we didn't have a dog. After that day I got to thinking about
the time that we had met my mom's new goats and we had to force James to sit in my mom's lap and hold some celery, and how I had to bribe him with Diet
Coke to ride one of her horses. I just chalked it up to sensory stuff.

When I asked our ABA program director about it
he said that at that point James might not view animals as living things. To
think that James could get an autism dog one day and he would not know that it
was there to be his companion, helper, and friend was almost more than I could
handle. I'm happy to say that now when Sadie, the puppy he met, comes to therapy
sessions with her mommy James says her name and will go lay his head on her
side when he is having a tantrum to regain his emotions, or give her high-fives on her paws!

Gizmo, our Pugshire, half pug half yorkie. He's been here since
James was born but James didn't know who or what he was.

Here are a few Facebook statuses that I have posted over the past six months:

September 17, 2012- First day of ABA Therapy. James'
therapist brings James out of the room all excited. "He said 'mom' ".
Then we asked James who I was and he said "Mom-mee". First time ever.
So worth $100,000 therapy.

September 24, 2012- Today James called me 'mommy' for the
fourth time, my mom was on the phone too, it was awesome. Still waiting for
'daddy' though

October 1, 2012- He did it! He just called Christopher Heuer
daddy! Yay for James! Holy choked up. So wonderful. Talk about making the rest
of my week!

November 4, 2012- Get ready to cry: They're playing WITH
each other. Not Lily trying to get him to respond to her or pulling on him. Not
both of them playing with the same toy at the same time. Not both of them
playing with the same grown-up at the same time, but WITH each other. She put
his sandals on him and they're running around the basement. He's chasing HER
(not her chasing him), and they're both doing the patented shriek/laugh thing
that they do. They've been going at it for about ten minutes and he hasn't
gotten distracted by any of his other toys, even walking on top of them to get
to her. And at some point as he was running by he said something that sounded
like 'fun'. That is ABA and thousands of dollars at work. SO, SO worth it. -They will be 3 in six weeks. It's taken poor Lily three years to have her best friend play WITH her. She won't remember it but me and her daddy (Christopher Heuer) will.

December 11, 2012- That moment when someone says "I
admire you for the way you handle all of your problems and take care of your
family at the same time" and you ALMOST say back "No you don't,
you're just glad it's me and not you".

December 17, 2012- $30 short in James' therapy account for
payroll this week. Makes me sick to my stomach. But he did say 'I love you' to
our head therapist last week, so it kinda reminds you what you're doing this
for... right?

And the most recent Facebook status that is one of the most
important to me:

January 12, 2013- So today James said "Ouch." Why is this a big deal?
Before today James has only said "Ow" and only during play- this
means if anything has ever hurt him he hasn't been able to tell us.Last year we were in Disneyland and James started to cry. We had no idea why. We left the park and carried him for almost a mile back to our hotel room with him screaming bloody murder. When we got to the hotel room we stripped off all of his clothes and he was fine. This makes me assume that he was too hot (he had a lot of layers). Not the same as saying "ow" or "ouch" but he couldn't tell us what was wrong.
Today I was putting his shoes on and someone had tightened them and they didn't just slip on like normal. We were just going in the car to go through the drive-thru pharmacy so I didn't want to take the time to undo the laces so I was just kind of wedging it onto his foot (don't judge, you know you've done it). After a few moments he said "Ouch". He told me that I was hurting his foot, Robin heard it. I loosened his shoe which he then promptly took off and laughed at me. And we praised him so much for saying it he just kept repeating it. But here is one time in his life that he didn't have to hurt because he was able to tell us.

Lily and James in their layers at Disneyland (notice the cute gloves)

And our newest "big deal" status:

January 23, 2013- James
called Robin "grandma"
for the first time over the weekend. Whoever knew that two syllables could
cause so many happy tears.

I think the thing that has happened over the past six months that brought so many happy tears are names. James has learned how to say the names of our family members AND he will say their name when he sees them (if he feels so inclined). In November James heard my dad talk, not even in his line of view, and he said, "Papa". I remember all of the times he said each of his therapists' names for the first time. The first time he said "Gizzy" (our dog). I wish I could put into words how much hearing these names has meant to the people around him, I wish I could let other people experience it, it reminds me how hard this little man is working everyday.

I turned 28 on Feb 4, Chris and I are 6 months in, I can't really see the light atthe end of the tunnel. Ask me again in another 6 months and maybe I will.

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The Reader's Digest Bio of Our Family

The Heuer Family, April 2012

I'm Ginger and this is our family. Chris, age 29, me, age 29, and our twins Lily and James, age 4. I thought it was weird to have a blog titled "The Heuer Family" but not tell anyone who we are.

Chris and I met in 2003 in the BYU Marching Band, started dating in 2004 and got married in 2007. About 2 years later we got our puppy Gizmo and about a year after that we had our twins, Lily and James. Lily is a family name on Chris' side (plus I've always liked the name), and James is Chris' middle name (so their names have nothing to do with Harry Potter). We recently got a puppy named Tonka for Lily. She takes great care of him and he is her pride and joy.

Chris graduated from BYU in April 2013 with a degree in Computer Science. I stay home with the twins trying not to lose my mind running a therapy program.

We live in Chris' parents' basement in Utah- Utah being a state that doesn't require insurance companies to cover autism treatments, it leaves all of James' therapy to be paid for on our own. We don't know what's going to happen next week but we're trying our hardest to find resources to pay for it.

Right now, we're trucking along, working our hardest to give James what he needs and make sure Lily feels important (she takes her responsibilities as a puppy mommy very seriously). I can't say how often I'll update, blogs always seem so touchy-feely to me and I am so not like that. But I'll try.